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PURPOSE: Rasch analysis and exploratory factor analysis (EFA) were used to evaluate the structural validity of the ASCOT-Proxy measures completed by staff on behalf of older adults resident in care homes, by comparison to the ASCOT-SCT4, the measure of social care-related quality of life (SCRQoL) from which the ASCOT-Proxy was developed. METHODS: EFA was conducted on the ASCOT-SCT4 and the two ASCOT-Proxy measures (Proxy-Proxy, Proxy-Resident), to determine if they retained the single factor of the original ASCOT-SCT4 measure found in samples of older community-dwelling adults. Rasch analysis was also applied to measures with a single factor structure in the EFA. RESULTS: ASCOT-Proxy-Resident had a single factor structure, as did the original ASCOT-SCT4 (also, found in this analysis when completed by care home staff). The ASCOT-Proxy-Proxy had a two factor structure. Rasch analysis of ASCOT-Proxy-Resident and ASCOT-SCT4 had an acceptable model fit, internal consistency and met the assumptions of unidimensionality and local independence. There was evidence of less than optimal distinguishability at some thresholds between responses, and low frequency of rating of the 'high level needs'. CONCLUSION: The ASCOT-Proxy-Resident is a valid instrument of SCRQoL for older adults resident in care homes, completed by staff proxies. Due to the two-factor structure, which differs from the original ASCOT-SCT4, we do not recommend the use of the ASCOT-Proxy-Proxy measure, although collecting data as part of the ASCOT-Proxy questionnaire may support its feasibility and acceptability. Further qualitative study of how care home staff complete and perceive the ASCOT-Proxy is encouraged for future studies.
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Procurador , Psicometria , Qualidade de Vida , Humanos , Masculino , Feminino , Idoso , Análise Fatorial , Inquéritos e Questionários/normas , Idoso de 80 Anos ou mais , Reprodutibilidade dos Testes , Casas de Saúde , Pessoa de Meia-Idade , Adulto , Instituição de Longa Permanência para IdososRESUMO
BACKGROUND: People with dementia living at home represent a growing group of social care services users in England. Many are unable to complete questionnaires due to cognitive impairment. The ASCOT-Proxy is an adapted version of an established measure, ASCOT, which was developed as a way of collecting social care-related quality of life (SCRQoL) data from this group of service users, either alone or alongside the ASCOT-Carer, a measure of SCRQoL for unpaid carers. The ASCOT-Proxy includes two perspectives, the proxy-proxy perspective ('My opinion: What I think') and proxy-person perspective ('What I think the person I represent thinks'). We aimed to establish the feasibility, construct validity and reliability of the ASCOT-Proxy and ASCOT-Carer, with unpaid carers of people with dementia living at home unable to self-report. We also aimed to establish structural characteristics of the ASCOT-Proxy. METHODS: Cross-sectional data were collected using self-administered questionnaire (paper or online) among unpaid carers living in England between January 2020 and April 2021. Unpaid carers could take part if they supported someone living with dementia who was unable to self-complete a structured questionnaire. The person living with dementia or their unpaid carer had to use at least one social care service. We used the proportion of missing data to establish feasibility, ordinal exploratory factor analysis to establish structural characteristics, Zumbo's ordinal alpha for internal reliability, and hypothesis testing for construct validity. We also conducted Rasch analysis. RESULTS: We analysed data for 313 carers (62.4(± 12.0) years, 75.7% (N=237) females). We were able to calculate the ASCOT-Proxy-proxy overall score for 90.7% of our sample, the ASCOT-Proxy-person overall score for 88.8% of our sample and in case of the ASCOT-Carer for 99.7% of our sample. As there was an issue with structural characteristics of the ASCOT-Proxy-proxy we conducted Rasch, reliability and construct validity analysis for the ASCOT-Proxy-person and ASCOT-Carer only. CONCLUSIONS: This was a first study to explore psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer with unpaid carers of people with dementia living at home unable to self-report. There are some aspects of the psychometric characteristics of the ASCOT-Proxy and ASCOT-Carer that warrant further investigation in future. Trial registration NA.
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Cuidadores , Demência , Feminino , Humanos , Cuidadores/psicologia , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Estudos Transversais , Estudos de Viabilidade , Inglaterra , Inquéritos e Questionários , Demência/psicologiaRESUMO
INTRODUCTION: The adult social care outcomes toolkit (ASCOT) measures social care-related quality of life (SCRQoL) using self-completion questionnaires and interviews. Many care home residents find such methods inaccessible, leading to a reliance on proxy-reporting. This study aimed to establish the psychometric properties of the mixed-methods toolkit [ASCOT-Care Homes, 4 outcome (CH4)] for measuring SCRQoL when residents cannot self-report. METHODS: Two cross-sectional, mixed-methods studies were undertaken in care homes for older people in England between 2015 and 2020. We used the ASCOT-CH4 (observation, and interviews with residents and proxies) to collect information about SCRQoL and collected additional data on residents' needs and characteristics, and variables hypothesised to be related to SCRQoL.Hypothesis testing was applied to establish construct validity, Cronbach's alpha for internal consistency and exploratory factor analysis for structural validity. RESULTS: The combined dataset included 475 residents from 54 care homes (34 nursing, 20 residential). Half had a diagnosis of dementia. Less than a third of residents were able to complete an ASCOT interview. Observations and proxy interviews informed researcher ratings, meaning there were no missing ASCOT-CH4 scores. ASCOT-CH4 was found to be a weak unidimensional scale, consistent with other ASCOT measures, with acceptable internal consistency (α = 0.77, 8 items). Construct validity was supported by the findings. CONCLUSIONS: The ASCOT-CH4 is an alternative to conventional proxy-questionnaires for measuring the SCRQoL of care home residents, with good psychometric properties. A limitation is that users need a range of data collection skills. Future research should explore whether findings are replicable when data are collected by other researchers.
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Qualidade de Vida , Projetos de Pesquisa , Humanos , Idoso , Autorrelato , Estudos Transversais , Apoio SocialRESUMO
BACKGROUND: Care homes are increasingly important settings for intervention research to enhance evidence-informed care. For such research to demonstrate effectiveness, it is essential that measures are appropriate for the population, setting and practice contexts. OBJECTIVE: To identify care home intervention studies and describe the resident outcome measures used. DESIGN: Scoping review. METHODS: We reviewed international care home research published from 2015 to August 2022. We searched MEDLINE, EMBASE, CINAHL and ASSIA. We included any intervention study conducted in a care home, reporting resident outcomes. We extracted resident outcome measures, organised these using the domains of an adapted framework and described their use. RESULTS: From 7,330 records screened, we included 396 datasets reported in 436 publications. These included 12,167 care homes and 836,842 residents, with an average of 80 residents per study. The studies evaluated 859 unique resident outcomes 2,030 times using 732 outcome measures. Outcomes were evaluated between 1 and 112 times, with 75.1% of outcomes evaluated only once. Outcome measures were used 1-120 times, with 68.4% of measures used only once. Only 14 measures were used ≥20 times. Functional status, mood & behaviour and medications were the commonest outcome domains assessed. More than half of outcomes were assessed using scales, with a fifth using existing records or administrative data. CONCLUSIONS: There is significant heterogeneity in the choice and assessment of outcomes for intervention research in care homes. There is an urgent need to develop a consensus on useful and sensitive tools for care homes, working with residents, families and friends and staff.
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Instituição de Longa Permanência para Idosos , Internacionalidade , Avaliação de Resultados em Cuidados de Saúde , Pesquisa , Idoso , Humanos , Prática Clínica Baseada em Evidências , Conjuntos de Dados como Assunto , Projetos de PesquisaRESUMO
BACKGROUND: It is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs. AIM: This study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care-related quality of life. METHOD: We used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed. RESULTS: We started with the standard ASCOT questionnaire to assess the care-related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met. CONCLUSION: There is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long-term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person-centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users. PATIENT OR PUBLIC CONTRIBUTION: Service users with dementia were involved in the design of the 'Easy Read' questionnaire used in the study.
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Demência , Pessoas com Deficiência , Serviços de Assistência Domiciliar , Idoso , Demência/terapia , Humanos , Assistência de Longa Duração , Qualidade de Vida/psicologiaRESUMO
BACKGROUND: Care homes provide long term care for older people. Countries with standardised approaches to residents' assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and review residents' everyday care. The review aimed to develop a theory-driven understanding of how care home staff can effectively implement and use MDS to plan and deliver care for residents. METHODS: The realist review was organised according to RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines. There were three overlapping stages: 1) defining the scope of the review and theory development on the use of minimum data set 2) testing and refining candidate programme theories through iterative literature searches and stakeholders' consultations as well as discussion among the research team; and 3) data synthesis from stages 1 and 2. The following databases were used MEDLINE via OVID, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ASSIA [Applied Social Sciences Citation Index and Abstracts]) and sources of grey literature. RESULTS: Fifty-one papers informed the development of three key interlinked theoretical propositions: motivation (mandates and incentives for Minimum Data Set completion); frontline staff monitoring (when Minimum Data Set completion is built into the working practices of the care home); and embedded recording systems (Minimum Data Set recording system is integral to collecting residents' data). By valuing the contributions of staff and building on existing ways of working, the uptake and use of an MDS could enable all staff to learn with and from each other about what is important for residents' care CONCLUSIONS: Minimum Data Sets provides commissioners service providers and researchers with standardised information useful for commissioning planning and analysis. For it to be equally useful for care home staff it requires key activities that address the staff experiences of care, their work with others and the use of digital technology. REGISTRATION: PROSPERO registration number CRD42020171323.
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Assistência de Longa Duração , Motivação , Idoso , HumanosRESUMO
OBJECTIVES: This study estimates the prevalence of unmet social care needs of people over 50 living in England with cancer and the effect of cancer on unmet needs. METHODS: We used data from the English Longitudinal Study of Ageing. We estimated the mean, standard deviation and 95% CI of the prevalence of unmet social care needs among people with cancer. Logistic regression analysis with individual random effects was used to estimate the effect of cancer on unmet needs controlling for other determinants. Pain measures were included stepwise in the regression to estimate their mediating effect. RESULTS: The prevalence rate of unmet social care needs among people living with cancer is 9% (SD = 0.29; 95% CI: 8.3-10) compared to 6% (SD = 0.24; 95% CI: 6.1-6.5) among people without cancer. People with cancer have significantly higher odds of having unmet needs by a factor of 1.44 (95% CI: 1.20-1.72), after controlling for the effect of other characteristics. Adding pain measures reduces the effect of cancer to a factor of 1.36 (95% CI: 1.14-1.64) in the odds of unmet needs but still remains statistically significant. CONCLUSIONS: A more integrated approach to cancer care is more likely to address the high level of unmet needs and consequent adverse implications.
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Necessidades e Demandas de Serviços de Saúde , Neoplasias , Humanos , Estudos Longitudinais , Neoplasias/epidemiologia , Prevalência , Apoio Social , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The quality of life of people receiving health and social care is an important indicator of service quality, but the relationship between patient experience and outcomes and regulator quality ratings in England is unknown. In 2013, the health and social care regulator in England, the Care Quality Commission (CQC), introduced a new ratings system and by February 2017, all social care services were inspected and awarded new quality ratings (outstanding, good, requires improvement and inadequate). This study aimed to explore whether quality ratings were associated with residents' quality of life, controlling for confounding variables. METHODS: We conducted a nested, cross-sectional study, collecting social care-related quality of life (SCRQoL) data for 293 older care home residents in 34 care homes (20 nursing and 14 residential) in the South East of England. CQC ratings and other resident and home-level variables were also collected for the analysis. Multilevel modelling explored whether residents' social care-related quality of life (SCRQoL) was associated with regulator ratings, controlling for confounding variables. RESULTS: Outstanding and good homes were collapsed into one category and compared with homes requiring improvement. Nationally, only 2 % of care homes for older people are rated as inadequate and it was not possible to capture sufficient numbers for the analysis. We recruited one but it was re-inspected during the fieldwork period and its rating changed to requires improvement. The random intercept multilevel model, which accounted for 16.93% of the differences in SCRQoL within homes and 69.80% between, indicated that better SCRQoL was significantly associated with being female, better functioning, no dementia diagnosis, fewer communication difficulties, and living in a care home rated as outstanding/good by CQC. Size of home and registration category were not significant predictors. CONCLUSIONS: This study found evidence that quality ratings are associated with residents' SCRQoL. As well as aiming to improve quality and ensure minimum standards, quality ratings have the potential to inform user choice and help the public compare care homes based on quality. Future research to establish the generalisability and replicability of the results is required.
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Instituição de Longa Permanência para Idosos/normas , Casas de Saúde/normas , Qualidade da Assistência à Saúde , Qualidade de Vida , Serviço Social/normas , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Inglaterra , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: The Adult Social Care Outcomes Toolkit (ASCOT-SCT4) is a multi-attribute utility index designed for the evaluation of long-term social care services. The measure comprises eight attributes that capture aspects of social care-related quality of life. The instrument has previously been validated with a sample of older adults who used home care services in England. This paper aims to demonstrate the instrument's test-retest reliability and provide evidence for its validity in a diverse sample of adults who use publicly-funded, community-based social care in England. METHODS: A survey of 770 social care service users was conducted in England. A subsample of 100 services users participated in a follow-up interview between 7 and 21 days after baseline. Spearman rank correlation coefficients between the ASCOT-SCT4 index score and the EQ-5D-3 L, the ICECAP-A or ICECAP-O and overall quality of life were used to assess convergent validity. Data on variables hypothesised to be related to the ASCOT-SCT4 index score, as well as rating of individual attributes, were also collected. Hypothesised relationships were tested using one-way ANOVA or Fisher's exact test. Test-retest reliability was assessed using the intra-class correlation coefficient for the ASCOT-SCT4 index score at baseline and follow-up. RESULTS: There were moderate to strong correlations between the ASCOT-SCT4 index and EQ-5D-3 L, the ICECAP-A or ICECAP-O, and overall quality of life (all correlations ≥ 0.3). The construct validity was further supported by statistically significant hypothesised relationships between the ASCOT-SCT4 index and individual characteristics in univariate and multivariate analysis. There was also further evidence for the construct validity for the revised Food and drink and Dignity items. The test-retest reliability was considered to be good (ICC = 0.783; 95% CI: 0.678-0.857). CONCLUSIONS: The ASCOT-SCT4 index has good test-retest reliability for adults with physical or sensory disabilities who use social care services. The index score and the attributes appear to be valid for adults receiving social care for support reasons connected to underlying mental health problems, and physical or sensory disabilities. Further reliability testing with a wider sample of social care users is warranted, as is further exploration of the relationship between the ASCOT-SCT4, ICECAP-A/O and EQ-5D-3 L indices.
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Pessoas com Deficiência/psicologia , Qualidade de Vida/psicologia , Serviço Social/normas , Inquéritos e Questionários/normas , Adulto , Idoso , Inglaterra , Feminino , Humanos , Masculino , Transtornos Mentais/psicologia , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Reprodutibilidade dos Testes , Estatísticas não Paramétricas , Adulto JovemRESUMO
BACKGROUND: The Adult Social Care Outcomes Toolkit (ASCOT) measures social care related quality of life (SCRQoL) and can be used to measure outcomes and demonstrate impact across different social care settings. This exploratory study built on previous work by collecting new inter-rater reliability data on the mixed-methods version of the toolkit and exploring how it might be used to inform practice in four case study homes. METHOD: We worked with two care home providers to agree an in-depth study collecting SCRQoL data in four case-study homes. Data was collected about residents' age, ethnicity, cognitive impairment, ability to perform activities of daily living and SCRQoL in the four homes. Feedback sessions with staff and managers were held in the homes two weeks after baseline and follow-up data collected three months later. Interviews with managers explored their views of the feedback and recorded any changes that had been made because of it. RESULTS: Participant recruitment was challenging, despite working in partnership with the homes. Resident response rates ranged from 23 to 54 % with 58 residents from four care homes taking part in the research. 53 % lacked capacity to consent. Inter-rater reliability for the ASCOT ratings of SCRQoL were good at time one (IRR = 0.72) and excellent at time two (IRR = 0.76). During the study, residents' ability to perform activities of daily living declined significantly (z = -2.67, p < .01), as did their expected needs in the absence of services (z = -2.41, p < .05). Despite these rapid declines in functionings, residents' current SCRQoL declined slightly but not significantly (Z = -1.49, p = .14). Staff responded positively to the feedback given and managers reported implementing changes in practice because of it. CONCLUSION: This exploratory study faced many challenges in the recruitment of residents, many of whom were cognitively impaired. Nevertheless, without a mixed-methods approach many of the residents living in the care homes would have been excluded from the research altogether or had their views represented only by a representative or proxy. The value of the mixed-methods toolkit and its potential for use by providers is discussed.
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BACKGROUND: The Adult Social Care Outcomes Toolkit was developed to measure outcomes of social care in England. In this study, we translated the four level self-completion version (SCT-4) of the ASCOT for use in the Netherlands and performed a cross-cultural validation. METHODS: The ASCOT SCT-4 was translated into Dutch following international guidelines, including two forward and back translations. The resulting version was pilot tested among frail older adults using think-aloud interviews. Furthermore, using a subsample of the Dutch ACT-study, we investigated test-retest reliability and construct validity and compared response distributions with data from a comparable English study. RESULTS: The pilot tests showed that translated items were in general understood as intended, that most items were reliable, and that the response distributions of the Dutch translation and associations with other measures were comparable to the original English version. Based on the results of the pilot tests, some small modifications and a revision of the Dignity items were proposed for the final translation, which were approved by the ASCOT development team. The complete original English version and the final Dutch translation can be obtained after registration on the ASCOT website ( http://www.pssru.ac.uk/ascot ). CONCLUSIONS: This study provides preliminary evidence that the Dutch translation of the ASCOT is valid, reliable and comparable to the original English version. We recommend further research to confirm the validity of the modified Dutch ASCOT translation.
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Atividades Cotidianas , Idoso Fragilizado , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Comparação Transcultural , Inglaterra , Etnicidade , Feminino , Humanos , Masculino , Países Baixos , Projetos Piloto , Reprodutibilidade dos Testes , Inquéritos e Questionários , TraduçõesRESUMO
BACKGROUND: Alongside an increased policy and practice emphasis on outcomes in social care, English local authorities are now obliged to review quality at a service level to help in their new role of ensuring the development of diverse and high-quality care markets to meet the needs of all local people, including self-funders. The Adult Social Care Outcomes Toolkit (ASCOT) has been developed to measure the outcomes of social care for individuals in a variety of care settings. Local authorities have expressed an interest in exploring how the toolkit might be used for their own purposes, including quality monitoring. This study aimed to explore how the care homes version of the ASCOT toolkit might be adapted for use as a care home quality indicator and carry out some preliminary testing in two care homes for older adults. METHODS: Consultations were carried out with professional and lay stakeholders, with an interest in using the tool or the ratings it would produce. These explored demand and potential uses for the measure and fed into the conceptual development. A draft toolkit and method for collecting the data was developed and the feasibility of using it for quality monitoring was tested with one local authority quality monitoring team in two homes for older adults. RESULTS: Stakeholders expressed an interest in care home quality ratings based on residents' outcomes but there were tensions around who might collect the data and how it might be shared. Feasibility testing suggested the measure had potential for use in quality monitoring but highlighted the importance of training in observational techniques and interviewing skills. The quality monitoring officers involved in the piloting recommended that relatives' views be collected in advance of visits, through surveys not interviews. CONCLUSIONS: Following interest from another local authority, a larger evaluation of the measure for use in routine quality monitoring is planned. As part of this, the ratings made using this measure will be validated against the outcomes of individual residents and compared with the quality ratings of the regulator, the Care Quality Commission.
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Formação de Conceito , Serviços de Assistência Domiciliar/normas , Indicadores de Qualidade em Assistência à Saúde , Idoso , Idoso de 80 Anos ou mais , Feminino , Grupos Focais , Humanos , Masculino , Transtornos Mentais , Pessoa de Meia-Idade , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
The aim is to describe and trial a pragmatic method to produce estimates of the incremental cost-effectiveness of care services from survey data. The main challenge is in estimating the counterfactual; that is, what the patient's quality of life would be if they did not receive that level of service. A production function method is presented, which seeks to distinguish the variation in care-related quality of life in the data that is due to service use as opposed to other factors. A problem is that relevant need factors also affect the amount of service used and therefore any missing factors could create endogeneity bias. Instrumental variable estimation can mitigate this problem. This method was applied to a survey of older people using home care as a proof of concept. In the analysis, we were able to estimate a quality-of-life production function using survey data with the expected form and robust estimation diagnostics. The practical advantages with this method are clear, but there are limitations. It is computationally complex, and there is a risk of misspecification and biased results, particularly with IV estimation. One strategy would be to use this method to produce preliminary estimates, with a full trial conducted thereafter, if indicated.
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Atividades Cotidianas , Serviços de Saúde para Idosos/economia , Serviços de Assistência Domiciliar/economia , Assistência de Longa Duração/economia , Qualidade de Vida , Idoso , Análise Custo-Benefício , Inglaterra , Serviços de Saúde para Idosos/normas , Serviços de Assistência Domiciliar/normas , Humanos , Assistência de Longa Duração/métodos , Assistência de Longa Duração/normas , Medicina Estatal/economia , Medicina Estatal/normasRESUMO
Background: Efforts to build and foster adult social care research in England have historically encountered more challenges to its growth and expansion compared with health research, with a sector facing significant barriers in facilitating research activity due to a lack of resourcing, poor valuation or understanding of the profile of social care research. The landscape for supporting research in adult social care has been rather bleak, but in recent years there has been recognition of the need to foster a research community. The National Institute for Health and Care Research in England have committed to investing in social care research capacity by funding six adult social care partnerships, with one based in Southeast England. Process developing Communities of Practice COPs: Three large online networking events were held in the first year of the project to engage managers and practitioners from the local authority and from the wider adult social care sector. These took place in July and November 2021, with a last event in March 2022. Two COPs were identified, following an ordering and thematising process of feedback from the networking events, of: (a) Supporting people with complex needs throughout the lifespan, and (b) Enhancing, diversifying and sustaining the social care workforce. Whilst it would be premature to identify their long-term impacts, through the facilitation of 20 COP meetings held so far, alongside the engagement platforms and enrichment resources, these have provided a space for regular communication in the sector, knowledge sharing and networking between COP members. Conclusions: The COP framework offers a collaborative approach to initiating research from the grass-roots level in adult social care. This paper focuses on how the COP model offers great promise for knowledge-exchange providing a forum to generate and disseminate knowledge around social care in our two COP domains.
Social care research looks into how care and support is delivered enabling people to continue to be independent, keep their dignity and help them achieve a better quality of life. The social care sector is responsible for delivering services and are provided by local authorities, third or private sector organisations. Research in adult social care is important to help the social care workforce understand which approaches and interventions work and how to improve the quality of care and support. However, there are barriers with setting up and running a research study in the social care sector, including limited dedicated time for the social care workforce to do research, accessing participants through providers, commissioners or unpaid carers, and due to the fragmented nature of the sector, difficulties in facilitating or supporting research. There are few opportunities for the social care workforce to develop their skills and experiences to undertake their own research. In order to help the social care workforce foster a culture of research and learning, we have used a well-known group learning and sharing framework called Communities of Practice (COPs) to help generate a culture of research involving all providers and users of social care. We developed the COPs by inviting them to three online networking events to identify what topics of research are important to providers and users. Their ideas were then put into themes and discussed, and two areas were finally decided upon for the COPs of: (a) Supporting people with complex needs throughout the lifespan, and (b) Enhancing, diversifying and sustaining the social care workforce. The COPs provide a place for users and providers to meet and discuss what research is important to them to identify some potential solutions to the problems encountered in adult social care.
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INTRODUCTION: Health and care data are routinely collected about care home residents in England, yet there is no way to collate these data to inform benchmarking and improvement. The Developing research resources And minimum data set for Care Homes' Adoption and use study has developed a prototype minimum data set (MDS) for piloting. METHODS AND ANALYSIS: A mixed-methods longitudinal pilot study will be conducted in 60 care homes (approximately 960 residents) in 3 regions of England, using resident data from cloud-based digital care home records at two-time points. These will be linked to resident and care home level data held within routine National Health Service and social care data sets. Two rounds of focus groups with care home staff (n=8-10 per region) and additional interviews with external stakeholders (n=3 per region) will explore implementation and the perceived utility of the MDS. Data will be assessed for completeness and timeliness of completion. Descriptive statistics, including percentage floor and ceiling effects, will establish data quality. For validated scales, construct validity will be assessed by hypothesis testing and exploratory factor analysis will establish structural validity. Internal consistency will be established using Cronbach's alpha. Longitudinal analysis of the pilot data will demonstrate the value of the MDS to each region. Qualitative data will be analysed inductively using thematic analysis to understand the complexities of implementing an MDS in care homes for older people. ETHICS AND DISSEMINATION: The study has received ethical approval from the London Queen's Square Research Ethics Committee (22/LO/0250). Informed consent is required for participation. Findings will be disseminated to: academics working on data use and integration in social care, care sector organisations, policy makers and commissioners. Findings will be published in peer-reviewed journals. Partner NIHR Applied Research Collaborations, the National Care Forum and the British Geriatrics Society will disseminate policy briefs.
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Projetos de Pesquisa , Medicina Estatal , Humanos , Idoso , Projetos Piloto , Inglaterra , LondresRESUMO
BACKGROUND: The adult social care outcomes toolkit (ASCOT) includes a preference-weighted measure of social care-related quality of life for use in economic evaluations. ASCOT has eight attributes: personal cleanliness and comfort, food and drink, control over daily life, personal safety, accommodation cleanliness and comfort, social participation and involvement, occupation and dignity. This paper aims to demonstrate the construct validity of the ASCOT attributes. METHODS: A survey of older people receiving publicly-funded home care services was conducted by face-to-face interview in several sites across England. Additional data on variables hypothesised to be related and unrelated to each of the attributes were also collected. Relationships between these variables and the attributes were analysed through chi-squared tests and analysis of variance, as appropriate, to test the construct validity of each attribute. RESULTS: 301 people were interviewed and approximately 10% of responses were given by a proxy respondent. Results suggest that each attribute captured the extent to which respondents exercised choice in how their outcomes were met. There was also evidence for the validity of the control over daily life, occupation, personal cleanliness and comfort, personal safety, accommodation cleanliness and comfort, and social participation and involvement attributes. There was less evidence regarding the validity of the food and drink and dignity attributes, but this may be a consequence of problems finding good data against which to validate these attributes, as well as problems with the distribution of the food and drink item. CONCLUSIONS: This study provides some evidence for the construct validity of the ASCOT attributes and therefore support for ASCOT's use in economic evaluation. It also demonstrated the feasibility of its use among older people, although the need for proxy respondents in some situations suggests that developing a version that is suitable for proxies would be a useful future direction for this work. Validation of the instrument on a sample of younger social care users would also be useful.
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Avaliação Geriátrica/métodos , Serviços de Assistência Domiciliar/estatística & dados numéricos , Assistência Individualizada de Saúde/estatística & dados numéricos , Qualidade de Vida , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Serviços de Saúde Comunitária/métodos , Serviços de Saúde Comunitária/estatística & dados numéricos , Estudos Transversais , Feminino , Idoso Fragilizado , Humanos , Estilo de Vida , Masculino , Segurança do Paciente , Autonomia Pessoal , Medição de Risco , Apoio Social , Fatores Socioeconômicos , Inquéritos e Questionários , Reino UnidoRESUMO
BACKGROUND: quality ratings of care homes are used by decision makers in the absence of direct information about outcomes. However, there is little evidence about the relationship between regulators' ratings of homes and residents' quality of life outcomes. OBJECTIVES: to capture social care-related quality of life (SCRQoL) outcomes for residents and investigate the relationship between outcomes and regulator quality ratings of homes. METHODS: data were collected for 366 residents of 83 English care homes for older people inspected during 2008. Outcomes were measured using the Adult Social Care Outcomes Toolkit (ASCOT). Multivariate multilevel modelling was used to investigate the relationship between quality of life outcomes and star ratings of homes, controlling for resident and home characteristics. RESULTS: care homes were delivering substantial gains in SCRQoL, but were more successful in delivering 'basic' (e.g. personal cleanliness) than higher-order domains (e.g. social participation). Outcomes were associated with quality ratings of residential homes but not of nursing homes. CONCLUSIONS: the approach to providing quality ratings by the regulator in England is currently under review. Future quality indicators need to demonstrate their relationship with quality of life outcomes if they are to be a reliable guide to commissioners and private individuals purchasing care.
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Atenção à Saúde/normas , Serviços de Saúde para Idosos/normas , Instituição de Longa Permanência para Idosos/normas , Casas de Saúde/normas , Avaliação de Processos e Resultados em Cuidados de Saúde/normas , Indicadores de Qualidade em Assistência à Saúde/normas , Qualidade de Vida , Atividades Cotidianas , Adulto , Idoso , Idoso de 80 Anos ou mais , Inglaterra , Avaliação Geriátrica , Pesquisa sobre Serviços de Saúde , Humanos , Pessoa de Meia-Idade , Análise Multivariada , Guias de Prática Clínica como Assunto , Participação Social , Apoio SocialRESUMO
Background: Measurement models inform the approach to assess a measure's validity and also how a measure is understood, applied and interpreted. With preference-based measures (PBMs), it is generally accepted that they are formative; however, if they are applied without preferences, they may be reflective, formative or mixed. In this study, we sought to empirically test whether the reflective, formative or mixed measurement model best describes PBMs of social care-related quality of life (SCRQoL) - specifically, the ASCOT and ASCOT-Carer. We also explored the network approach, as an alternative. Methods: ASCOT and ASCOT-Carer data were analyzed using confirmatory factor analysis and Multiple Indicators Multiple Causes models to test reflective, formative or mixed measurement models, respectively. Network analysis of partial correlations using the Gaussian graphical model was also conducted. Results: The results indicated that the reflective measurement model is the worst fit for ASCOT and ASCOT-Carer. The formative or mixed measurement models may apply to ASCOT. The mixed measurement model was the best fit for ASCOT-Carer. The network analysis indicated that the most important or influential items were Occupation and Personal cleanliness and comfort (ASCOT) and Time and space and Self-care (ASCOT-Carer). Conclusions: The ASCOT and ASCOT-Carer are best described as formative/mixed or mixed measurement models, respectively. These findings may guide the approach to the validation of cross-culturally adapted and translated versions. Specifically, we recommend that EFA be applied to establish structural characteristics, especially if the measure will be applied as a PBM and as a measure of SCRQoL. Network analysis may also provide further useful insights into structural characteristics.
For many people living with long-term health conditions or disabilities, community-based social care services (like, home care) enable them to maintain independence, stay connected, and to live well. For families and friends who care for someone ('carers'), these services may also help them. They may allow carers to continue in paid employment and to have time for hobbies, friendships, to stay healthy, and connect with others in a similar situation. An important question is what type(s) of community-based services, best support people and their carers. To find this out, we need a way of measuring the effect services have on people's lives. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that asks people about aspects of their life that might be affected by social care services (for example, having control over everyday life). This questionnaire has already been used by researchers and care providers to review how well social care services support people. There is also another version of the questionnaire called the ASCOT-Carer, which looks at aspects of life that are important to carers. There has been interest in culturally adapting and translating these measures into other languages. However, there are different ways of establishing how well a translated version relates back to the original. This is important to make sure that the new version is measuring what we expect it to. In this paper, we compare different ways of understanding the information collected using the ASCOT and ASCOT-Carer in England. This will inform how to approach the testing of ASCOT (and other similar measures) that have been translated into new languages. It also helps us to understand how different aspects of life that are supported by social care services are related to each other. This can inform our understanding of people's needs and how to best support them.
RESUMO
People with dementia and their carers are a growing subgroup of people who use community-based social care. These services are designed to maintain people's quality of life while living at home. The ASCOT measure of social care-related quality of life (SCRQoL), designed to evaluate quality and effectiveness of social care, has been adapted for proxy-report when someone is unable to self-report. The ASCOT-Carer has been developed to measure carer's own SCRQoL. This study sought to establish the factors related to SCRQoL of people living with dementia (PLWD, proxy-reported by carers) and their carers. Data were collected via a self-administered postal or online survey of 313 carers in England, from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia at home, who was unable to self-complete questionnaires. The person living with dementia or their carer had to use at least one social care service, e.g. home care. We recruited participants via an online volunteer panel and NHS sites. Multiple regression was applied to explore the factors significantly related to ASCOT SCRQoL by self- and proxy-report. Key influences on carers' own SCRQoL were their health, financial difficulties associated with caring, and satisfaction with social care support. Inadequate home design was significantly negatively associated with SCRQoL for PLWD. The latter stages of the pandemic-related restrictions (the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers. The study offers insight into the factors associated with SCRQoL. In particular, the findings highlight the importance of adequate home design for people with dementia; satisfactory social care support and limiting any adverse financial impact of caring are important for carers. The findings indicate a negative effect of COVID restrictions on SCRQoL of people with dementia.